"Suffering the Slings and Arrows of Outrageous Fortune"

She has been on the increased dose of Diamox for a week now – some days her headache is only a 2/10, other days it is a 8/10. Very frustrating – if she didn’t have the increased dose, she would be utterly miserable but right now the Diamox is just doing the bare minimum of controlling the headache.

Her headache seems to worsen when the weather is bad. Today is a calm weather day, so her headache is better; yesterday was bad weather and her headache was bad all day. I have started charting the daily barometric pressure, along with her pain level to see if there really is a connection – or if I am just crazy. Is it a coincidence that it was a year ago, during a stormy winter, when she got so terribly ill, then as spring came, the symptoms eased a bit? She either improved or just got tired of being cooped up in the bedroom and started coming out more – a bit of both, I think. Perhaps the weather plays a significant role in her symptoms than I had previously thought. My current theory is that the recent spat of stormy weather here tipped her intracranial pressure over the edge. I don’t think I am crazy but that is a matter of opinion!

Got bloodwork done yesterday, so hopefully we get the results of that in the next few days so we have a better idea of what is going on. We need to be watching her CO2 and postassium levels. Her CO2 needs to stay above 22 for the Diamox to work properly. It is very possible (likely even) that her CO2 levels are too low and that is preventing the Diamox from being as effective as it was previously.

Fortunately, there is a simple solution – baking soda capsules will help make her system more Alkaline. Dr. Diana *told* me to start Em on baking soda capsules when I first talked to her about Diamox – did I listen? No. Em was already taking so many pills every day and I just didn’t have the heart to make her take more. Bad idea! I took the path of least resistance and now Em is paying the price. Anyway, we have already started baking soda capsules ahead of whatever the test results show and will take them faithfully from now on.

I think the making of baking soda capsules deserves its own post – they are a headache of their own kind! I will try to get to that in the next couple of days. If I can help anyone else avoid the pitfall of neglecting to get/make/take baking soda capsules while taking Diamox – I will happily do so. As always, you will be able to learn from our experiences – good or bad!

Welcome!

Thanks for visiting my blog where I chronicle 'Our Life with Ehlers Danlos Syndrome'. I am sharing my family's journey with EDS (and everything that goes along with it) in the hope that our experiences will help someone else.

Go to Our Story to read about the early days of our EDS journey. Or click here to go to the first post of this blog, if you would like to start at the beginning.

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